Monthly Support Group Research Articles

OS02.4.A CAREGIVER PROGRAM IN NEURO-ONCOLOGY: UCSF EXPERIENCE CARING FOR MORE THAN 4,000 CAREGIVERS OVER THE LAST 10 YEARS

Abstract BACKGROUND Caregivers of patients with primary brain tumors are at high risk for distress and as they navigate caring for their loved one with both a cancer diagnosis and neurologic disorder. The last decade has seen growth of caregiver research in the brain tumor community, with evidence that caregiver mastery may correlate with survival in patients with glioblastoma (GBM). The UCSF Gordon Murray Neuro-Oncology Program, the first of its kind, launched in 2014 with a mission to address their unique needs. Caregiver care is now fully integrated into the clinical care of patients with brain tumors at UCSF, providing personalized care across the disease trajectory and programming to address common challenges and foster resilience. The Program includes a nurse, administrator, and social worker. Referrals occur 1) at first clinic appointment; 2) from clinical staff; and 3) caregivers of patients with GBM receive proactive outreach over the first 6 months after diagnosis. Caregivers are also contacted for bereavement support. Dedicated programming provides educational materials focusing on common concerns and building community through monthly support groups, educational webinars, annual retreats and family camp. We report our practical experience of the Program serving over 4,000 caregivers since its inception. MATERIAL AND METHODS Total number of individual caregivers were included from 01/2014 - 12/2023. Detailed demographic information was extrapolated during clinical interviews from a subset. Information regarding caregiver concerns and interventions was extracted from the medical records between 01/2017 - 12/2023. RESULTS The UCSF Gordon Murray Caregiver serves an annual average of 400 caregivers and over 800 encounters. Demographic information obtained from a subset revealed 66% females; 77% between 41-64 years of age; 60% a spouse; 89% working full time; and 30% had children in the home. The most common concerns for caregivers were informational (42%), followed by emotional (25%), and practical (23%). Examples of informational concerns included desire for informational resources, understanding the treatment plan/side effects, and understanding patient behavioral changes. Emotionally, they feel overwhelmed, uncertain, and sad. Practical concerns included physically caring for patients and issues around medical insurance, disability, and finances. Caregivers also expressed frequent concerns around talking with children/family members and feelings of isolation. CONCLUSION Caregivers of patients with primary brain tumors are at high risk of distress and have unique needs based on the tumor location and symptoms from treatment. Our practical 10 year experience of a dedicated, fully integrated, caregiver program highlights real world concerns of caregivers and identifies opportunities to develop tailored interventions to address these needs.

The Use of Evidence-Based Dietary Interventions for the Management of Obesity

Obesity has become a serious public health issue worldwide, with its prevalence steadily increasing. The potential consequences of this chronic disease, including cardiovascular disease, increased morbidity, and mortality, pose a significant burden on individuals and healthcare systems. Evidence has established that lifestyle and dietary modification are central to achieving effective weight loss. One approach shown to be efficacious in achieving weight loss is the use of a very low calorie ketogenic diet (VLCKD), which includes stages of induced ketosis, followed by a reintroduction to a low calorie diet and maintenance diet. Such regimens have been shown to result in sustained weight loss and, for some people, remission of Type 2 diabetes (T2D). A similar approach, which may also be a component of the VLCKD, is the use of total or partial replacement of meals using nutritionally complete shakes, bars, or soups. These may be combined with other weight loss measures, including bariatric surgery or medications. It is important that such programmes are delivered in a structured, medically-monitored, and supportive environment, such as laid out by Obesity Canada’s ‘5As’ programme. An ‘obesity shared medical appointment’ model is a multidisciplinary approach, whereby a patient with obesity is seen by a number of healthcare specialists, depending on their comorbidities. The patient also has the opportunity to meet with obesity specialists and engage in monthly patient support groups, all of which have been shown to be successful interventions in helping patients lead a healthier lifestyle, and gain more control over their weight. The following proceedings are based on talks given by leading obesity experts, presented at the 30th European Congress on Obesity (ECO 2023), which took place in Dublin, Republic of Ireland, in May 2023.

542 Identifying Psychosocial Factors Impacting Burn Survivors

Abstract Introduction Burn survivors often suffer from profound psychosocial stress. Following a traumatic burn, new stressors and mental health symptoms can arise, and previously existing factors can be amplified. Alleviation of these stressors can facilitate healing, treatment compliance, and favorable outcomes. We sought to better identify psychosocial factors that impact the lives of adult burn survivors. Our primary aim was to develop a psychosocial screening battery and brief screener to identify stressors common among such patients at our hospital-based outpatient burn center. Methods A survey was administered to adult burn survivors at a monthly support group. Participants were instructed to endorse items from a list of 39 possible stressors and symptoms that impacted them after their burn injury. The most frequently endorsed items were considered for inclusion in the screening tool. Results A total of 17 surveys were completed, nine (53%) of whom were men and eight (47%) of whom were women. Ages ranged from 18 to 79 years. The earliest burn injury occurred in 1990, and the most recent occurred in 2022. There were 17 survey items endorsed by 29% or more of the respondents (Table 1). Conclusions Numerous symptoms and stressors endorsed by participants align with mental health conditions like acute stress disorder, post-traumatic stress disorder (PTSD), anxiety, and depression. We decided to implement the Primary Care PTSD Screen and the Generalized Anxiety Disorder 7-Item within our outpatient clinic in addition to the depression screen already in use. Items not addressed by questions on these mental health screens were included in our brief burn survivor stress screening measure. Applicability of Research to Practice Implementation of this screening battery will enable identification of psychosocial factors impacting adult burn patients previously hospitalized as a result of their injuries. This will allow us to address patient concerns, offer recommendations for support and resources, and guide treatment planning to improve compliance and outcomes. In the future, this information will facilitate the development of additional programs to assist burn survivors.

Tuberculosis treatment outcomes and patient support groups, southern India.

To assess treatment outcomes in tuberculosis patients participating in support group meetings in five districts of Karnataka and Telangana states in southern India. Tuberculosis patients from five selected districts who began treatment in 2019 were offered regular monthly support group meetings, with a focus on patients in urban slum areas with risk factors for adverse outcomes. We tracked the patients' participation in these meetings and extracted treatment outcomes from the Nikshay national tuberculosis database for the same patients in 2021. We compared treatment outcomes based on attendance of the support groups meetings. Of 30 706 tuberculosis patients who started treatment in 2019, 3651 (11.9%) attended support groups meetings. Of patients who attended at least one support meeting, 94.1% (3426/3639) had successful treatment outcomes versus 88.2% (23 745/26 922) of patients who did not attend meetings (adjusted odds ratio, aOR: 2.44; 95% confidence interval, CI: 2.10-2.82). The odds of successful treatment outcomes were higher in meeting participants than non-participants for all variables examined including: age ≥ 60 years (aOR: 3.19; 95% CI: 2.26-4.51); female sex (aOR: 3.33; 95% CI: 2.46-4.50); diabetes comorbidity (aOR: 3.03; 95% CI: 1.91-4.81); human immunodeficiency virus infection (aOR: 3.73; 95% CI: 1.76-7.93); tuberculosis retreatment (aOR: 1.69; 1.22-2.33); and drug-resistant tuberculosis (aOR: 1.93; 95% CI: 1.21-3.09). Participation in support groups for tuberculosis patients was significantly associated with successful tuberculosis treatment outcomes, especially among high-risk groups. Expanding access to support groups could improve tuberculosis treatment outcomes at the population level.

Integrated [Primary +] Memory Care Clinic.

The Integrated Memory Care Clinic (IMCC) is a model of care for people living with dementia directed by advanced practice registered nurses. The post-diagnosis model incorporates the expertise of nursing, social work and nurse practitioners certified in gerontology, palliative care and/or geriatric psychiatry. The Clinic nurse practitioners provide comprehensive and coordinated primary care for dementia and other stable chronic conditions and episodic care for minor acute illnesses. Care delivery is structured to maximize ongoing dialogue with patients and their caregivers during office visits and by phone and patient portal access. The Clinic provides a number of services to care partners, including an after-hours line, stage-based educational groups, and a monthly support group. The IMCC aims to reduce the overall burden of dementia by partnering with affected individuals and their caregivers in the co-production of care. Now at full capacity, the IMCC serves 525 active patients and their care partners with 1.3 FTE primary care nurse practitioners. The mean age is 78.6 years; most are female (63%); and 42% identify as a racial minority. The majority of patients are moderate (27% early-moderate; 36% late-moderate) stage of dementia clinical syndrome. The mean monthly rate of hospital admissions for ambulatory care sensitive conditions in 2022 is 1.42%. The published rate for this population is 13-15%. Finally, the model is financially neutral in a fee-for-service environment. Open in 2015, the IMCC has combined primary care and dementia care in one clinical practice. The IMCC developed strong rapport and trust with patients and families to achieve outstanding health outcomes. The model is an American Academy of Nursing Emerging Edge Runner, recognized by NCQA as a Patient Centered Medical Home, recognized as a Level 2 Age-Friendly Health System participant, and a Best Practice Exemplar by the Institute for Patient- and Family-Centered Care.

Older adult maintaining and improving health self-management through peer supported SMART goal setting

Non-medical interventions to address risk factors (such as reducing smoking, increasing physical activity, and tackling limited social interaction) are needed to help tackle escalating social and financial health costs. Peer supported interventions have been used successfully to support persons’ health self-management; however, there is limited evidence for group interventions facilitated by older adults. A proof-of-concept study by the first author demonstrated the potential of older adults meeting in groups to each create and follow through with a single SMART goal for any area of health over one-month. This study extends SMART goal setting to enhancing health management over six months. Older adult participants from across Ontario will attend virtual SMART goal setting group sessions followed by six monthly support group meetings where they are free to choose any goal, whether a mitigation or a new behavior. Each month the facilitator will assist participants to continue, modify, or set a new goal. At the end participants will complete surveys about their satisfaction with the method, their results and their desire to continue with SMART goals. They will also be asked if they would like to facilitate new groups to continue the spread of peer-supported SMART goal groups. This study is designed to empower older adults to maintain or improve management of their physical, psychological, and/or social health. It will reveal the impact of an older adult created and guided group health intervention on feelings of self-efficacy and well-being.

Stress biomarkers as outcomes for support groups for people with memory loss and their caregivers (SO CALM)

AbstractBackgroundDespite the significant burden neuropsychiatric symptoms impose, rigorous research on behavioral interventions to address anxiety, apathy, and depression in people with dementia is limited, especially in those with mid‐ to late‐stage dementia. The Memory Counseling Program (MCP) at Wake Forest School of Medicine offers multi‐tiered support groups that are unique because 1) they are 10‐week, structured groups rather than open, monthly support groups and 2) they include the person living with dementia (PLWD) rather than targeting the caregiver alone.MethodWe measured quantitative biomarkers of stress to complement self‐reports at baseline, prior to initiation of support groups, with follow‐up visit within 10 days of last support group. We used paired t‐tests to examine the differences between pre‐group and post‐group measures for caregivers (Perceived Stress Scale, urinary cortisol, and allostatic load) and for PLWD (Apathy Evaluation Scale, urinary cortisol, and allostatic load). Allostatic load is the burden of chronic and repeated exposure to stress and a marker of stress resilience derived from a combination of labs, blood pressure, waist‐to‐hip ratio, and body‐mass index.ResultAmong 20 participants (1:1 caregiver and PLWD), self‐reports of Perceived Stress Scale and Apathy Evaluation Scales did not change after support group participation, however biomarkers of urinary cortisol and allostatic load decreased significantly after group participation. Among 10 caregivers, urinary cortisol changed from baseline mean 15.6µg/L (SD 12.7) to follow‐up mean 10.3 µg/L (SD 11.4, p<0.05) and allostatic load from baseline mean 5.6 (SD 2.1) to follow‐up mean 4.4 (SD 1.4, p<0.06). Among 10 PLWD, their mean baseline urinary cortisol 22 µg/L (SD 18.3) decreased to 9.8 µg/L (SD 8.0) at follow up and their allostatic load decreased from 5.9 (SD 2.1) at baseline to 5.1 (SD 1.5, p<0.05) at follow up.ConclusionThe Wake Forest Memory Counseling program non‐pharmacologic 10‐week structured support groups may be able to reduce objective stress biomarkers for both caregivers and PLWD. Future studies should test structured support groups with an active attention control in a prospective manner.

Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study.

BackgroundIn-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups.ObjectiveThe purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D.MethodsParticipants (13-18 years old with T1D for ≥6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups.ResultsOf 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they “related to the photos posted.” Over half of participants (8/11, 73%) reported “learning something new from the photos posted,” which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups.ConclusionsThe novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes.

504 Creative Aftercare Program Amidst Coronavirus Pandemic

IntroductionCoronavirus disease presented itself early in 2019 inducing a considerable degree of fear, worry, and unknown throughout the United States. National and State governed laws imposed social distancing measures, quarantining citizens, and isolating infected persons. Apart from its physical impact, COVID-19 pandemic has brought numerous changes to people’s lives affecting people both physically and psychologically. A key component of quality of life of burn survivors consist of maintaining a long-term burn center connection through support groups. Our burn center developed a virtual format for aftercare to provide psychological support during the pandemic.MethodsRegular attendees and new burn survivors were contacted by the aftercare specialist from an American Burn Associated verified burn center. Participants were surveyed on the best mode of contact and current addresses were obtained. “Happy Mail” was mailed to support group participants 3 times/month. Items included in these packages ranged from motivational sayings, gift cards, essential oils, candies, art projects, and reminders to log onto the virtual support groups. The gift packages also included a mental health check-in icebreaker. These gift packages took the place of our in-person support groups and contained all materials needed to engage and guide participation in the virtual monthly support group. Participants were then invited to join a social media support group for our local burn center.ResultsBurn survivors continued to receive quality psychosocial support to cope with and process feelings as well as validate emotions. Attendees regularly expressed gratitude in receiving “Happy Mail” as it brought a feeling of connectiveness to a group of burn survivors who rely on each other for peer support. The gift packages also served as a reminder of the upcoming virtual aftercare support groups as our attendance did not see a decline at monthly meetings.ConclusionsOur experience suggests that a method of offering “Happy Mail” as part of a curriculum to augment virtual aftercare can be a model to adapt to the emotional support burn survivors and their family members need during the pandemic.

Exploring penile cancer survivors' motivations and experiences of attending a support group: eUROGEN study

AbstractThe purpose of this study was to explore men's motivations and experiences of attending a penile cancer support group and critically analyse whether participating in the support group has an impact on their psychological well‐being. Eleven men attended a focus group facilitated by a cancer nurse specialist and a group facilitator. This was held in the hospital in the same setting as the monthly support group meeting. Written consent was gained. On the day an open question was asked to identify what motivates the men to attend the support group. The results were recorded using a digital audio recording device and then transcribed verbatim. Thematic analysis was then utilised to identify common themes. Six themes were identified as to why these men attended the penile cancer support group on a regular basis: making friendships, supporting others, sharing experiences, peer support, receiving information and raising awareness. Face to face support groups have shown to be a mode of delivering support to men who have been diagnosed and treated for this rare disease. These findings suggest that meeting men with a similar condition and sharing experiences of living with the disease were important to the men participating in this study.

The experience of adults recovering from an eating disorder in professionally-led support groups

PurposeThe aim of the study is to explore the experience of eating disorder support group participants. The research question is “What is the experience of adults recovering from an eating disorder in a professionally-led monthly support group?”Design/methodology/approachThis qualitative study explored the experience of adults recovering from an eating disorder in a professionally-led monthly support group. Participants were 18 adults recovering from an eating disorder who attended a monthly support group. The data were collected using an online anonymous survey and then analysed using a thematic analysis.FindingsThe main themes that emerged were: (1) sharing the pain and promise, (2) cautions and concerns and (3) facilitators have influence. The findings indicate that the support group provided a safe space to share their lived experience, that it reduced stigma and isolation, and improved participants' motivation and engagement. Moreover, the results revealed some challenges to the functioning of the group. These included management of discussions and dominant members, need for psycho-educational information and managing intense feelings, relating to body-related comparison and other mental disorder comorbidities.Originality/valueThis is the first study highlighting the valuable role of the facilitator in balancing content with compassion, in ensuring safety in the group, and potentially fulfilling a valuable education function in supporting participants in their eating disorder recovery journey.

A Clinician's Experience in Initiation and Navigation of a Support Group for Sickle Cell Disease Patients - Can We Break Patient Bias?

Abstract Title A Clinician's Experience in Initiation and Navigation of a Support group for Sickle Cell Disease Patients - Can we Break Patient Bias? Introduction: A 2010 qualitative research study by the Journal of the Health Care for the Underserved validates the finding that African Americans are suspicious of health care programs that are targeted specifically for African American as they believe that the system would have ill-intent. This adversarial relation with health care providers persists in the aftermath of the Tuskegee experiment and other historical research abuses. This is particularly relevant to sickle cell disease (SCD) as it affects minorities, especially the black population. SCD is one of the most common genetic disorders in the nation affecting approximately 100,000 Americans. 1 in 365 African American and 1 in 16,300 Hispanic American are affected by SCD. Chronic pain with frequent episodes of vasoocclusive or pain crises (VOC) are defining clinical features of the disease. Opioids are required during VOC for effective treatment and often is a source of difficulty for patients negotiating the health care system. Over time, SCD can cause multiple organ complications including strokes, cardiopulmonary disease, renal disease and neurocognitive deficits. The disease is associated with a decreased life expectancy. Methods Case vignettes of real-life experiences of adult patient with SCD were used to highlight the basis of suspicion of health care providers and health care systems. 25 adult patients aged > 18years old were allowed to express their concern with joining and attending a monthly support group by questionnaire. We captured the various narratives, sought to address their concern through individualized in person dialogue with the social worker, and then invited them again to attend. Results: There were several reasons presented by patients for their reluctant to attend the support group sessions. These included difficulty with transportation, competing demands such as need to provide for family, lack of child care, educational level and ability to comprehend in a group environment, hospitalizations, frequent overwhelmingly concerns over privacy and confidentiality including use of photographs for media event by the hospital. After social work provider intervention including providing taxi vouchers, 80% of patients could be convinced to attend their first monthly group sessions. Retention rates of approximately 90% were achieved though we did note that participation was influenced by weather and competing domestic events. Conclusions: Our study highlights the difficulty SCD patients had with trusting health care providers including social workers. However, the majority of patients could be convinced to attend support groups sessions by acknowledging and addressing their concerns. The study highlighted the various challenges patient had negotiating health care systems; and we highlight the difficulties surrounding trust of providers. However, we demonstrated feasibility in achieving the goals by addressing their legitimate concern. Printed Program Description: This program will explore historical practices that influence minority patient's engagement in groups and research and discuss best practices on how to address this. References Scharff, Darcell P., et al. "More than Tuskegee: Understanding Mistrust about Research Participation." Journal of Health Care for the Poor and Underserved, vol. 21, no. 3, 2010, pp. 879-897., doi:10.1353/hpu.0.0323. Nguyen, Bich-May. "The Most Shocking and Inhuman." Family Medicine, vol. 51, no. 1, 2019, pp. 5-7., doi:10.22454/fammed.2019.175092. Singhal, Astha, et al. "Racial-Ethnic Disparities in Opioid Prescriptions at Emergency Department Visits for Conditions Commonly Associated with Prescription Drug Abuse." Plos One, vol. 11, no. 8, 2016, doi:10.1371/journal.pone.0159224. Cohen, Rachel D. "Distrust Of Health Care System May Keep Black Men Away From Prostate Cancer Research." NPR, NPR, 17 Oct. 2018, www.npr.org/sections/health-shots/2018/10/17/658101432/distrust-of-health-care-system-may-keep-black-men-away-from-prostate-cancer-rese. Center for Disease Control and Prevention. (2019) Sickle Cell Disease (SCD) [online]. Available at: https://www.cdc.gov/ncbddd/sicklecell/data.html (Accessed: 8/29/2019). Disclosures No relevant conflicts of interest to declare.

Effectiveness of Support Groups for Patients With Contact Dermatitis: A Pilot Study.

Contact dermatitis can be difficult to manage and overwhelming for patients, often requiring significant lifestyle changes. The aim of the study was to investigate whether a contact dermatitis support group could help patients find community and learn from others who share similar experiences. Hour-long, monthly support group meetings facilitated by a social worker, research fellows, and a faculty dermatologist were held for approximately 1.5 years. A 32-question, cross-sectional survey was administered to assess perception of contact dermatitis and overall usefulness of the group. Between 2 and 5 patients attended each group session; 9 participants completed the survey. Most were female (77.8%) and white (77.8%), with an average age of 68.8 years. Eight participants (88.9%) reported that it was important or somewhat important to socialize with others affected by contact dermatitis. Three group members (33.3%) had met with attendees outside of the monthly sessions. The majority (77.8%) reported that the support group had a positive effect on their understanding of contact dermatitis and would recommend the group to others (88.9%). Support groups may be helpful for patients learning to cope with the challenges associated with contact dermatitis. Although preliminary feedback is promising, further investigation is warranted to determine whether these groups are effective on a larger scale.

Effect of a differentiated service delivery model on virological failure in adolescents with HIV in Zimbabwe (Zvandiri): a cluster-randomised controlled trial

Adolescents living with HIV face challenges to their wellbeing and antiretroviral therapy adherence and have poor treatment outcomes. We aimed to evaluate a peer-led differentiated service delivery intervention on HIV clinical and psychosocial outcomes among adolescents with HIV in Zimbabwe. 16 public primary care facilities (clusters) in two rural districts in Zimbabwe (Bindura and Shamva) were randomly assigned (1:1) to provide enhanced HIV care support (the Zvandiri intervention group) or standard HIV care (the control group) to adolescents (aged 13-19 years) with HIV. Eligible clinics had at least 20 adolescents in pre-ART or ART registers and were geographically separated by at least 10 km to minimise contamination. Adolescents were eligible for inclusion if they were living with HIV, registered for HIV care at one of the trial clinics, and either starting or already on ART. Exclusion criteria were being too physically unwell to attend clinic (bedridden), psychotic, or unable to give informed assent or consent. Adolescents with HIV at all clinics received adherence support through adult counsellors. At intervention clinics, adolescents with HIV were assigned a community adolescent treatment supporter, attended a monthly support group, and received text messages, calls, home visits, and clinic-based counselling. Implementation intensity was differentiated according to each adolescent's HIV vulnerability, which was reassessed every 3 months. Caregivers were invited to a support group. The primary outcome was the proportion of adolescents who had died or had a viral load of at least 1000 copies per μL after 96 weeks. In-depth qualitative data were collected and analysed thematically. The trial is registered with Pan African Clinical Trial Registry, number PACTR201609001767322. Between Aug 15, 2016, and March 31, 2017, 500 adolescents with HIV were enrolled, of whom four were excluded after group assignment owing to testing HIV negative. Of the remaining 496 adolescents, 212 were recruited at Zvandiri intervention sites and 284 at control sites. At enrolment, the median age was 15 years (IQR 14-17), 52% of adolescents were female, 81% were orphans, and 47% had a viral load of at least 1000 copies per μL. 479 (97%) had primary outcome data at endline, including 28 who died. At 96 weeks, 52 (25%) of 209 adolescents in the Zvandiri intervention group and 97 (36%) of 270 adolescents in the control group had an HIV viral load of at least 1000 copies per μL or had died (adjusted prevalence ratio 0·58, 95% CI 0·36-0·94; p=0·03). Qualitative data suggested that the multiple intervention components acted synergistically to improve the relational context in which adolescents with HIV live, supporting their improved adherence. No adverse events were judged to be related to study procedures. Severe adverse events were 28 deaths (17 in the Zvandiri intervention group, 11 in the control group) and 57 admissions to hospital (20 in the Zvandiri intervention group, 37 in the control group). Peer-supported community-based differentiated service delivery can substantially improve HIV virological suppression in adolescents with HIV and should be scaled up to reduce their high rates of morbidity and mortality. Positive Action for Adolescents Program, ViiV Healthcare.

Parent Participation in a Support Group for Families with Transgender and Gender-Nonconforming Children: "Being in the Company of Others Who Do Not Question the Reality of Our Experience".

Purpose: Parent support is considered crucial for the health of transgender and gender-nonconforming (trans/GNC) children, yet little research has focused on how to support parents and caregivers. This study considered the experience of participation in a support group for parents of transgender children on families.Methods: Online surveys were conducted with parents whose children were receiving clinical care at a gender specialty clinic and who participated at least once in a monthly support group. Close-ended questions addressed the importance of participation and open-ended questions addressed the specific ways it was helpful, how it impacted them and their trans/GNC child, and if they faced barriers to participating.Results: The majority of the 48 participants (77.1%) identified as female. The mean age of their trans/GNC child was 13.9 years (standard deviation 5.1, range 5–22 years); just over half (n=25) of their trans/GNC children identified as male. Participants overwhelmingly reported positive experiences with the support group, with 72.9% reporting that the group was either important or critically important to them and 66.7% reporting that it was important or critically important to their trans/GNC child. Perceived benefits included the opportunity to learn about legal, medical, and school issues and receive emotional support.Conclusion: Support groups provide an important complement to specialized clinical care for families with trans/GNC children. Logistical challenges, lack of age peers, and lack of people of color all served as limitations of the group. Further research is needed to understand the experiences of fathers and to determine if the support group model would be effective with racially/ethnically and economically diverse populations.

MetaPink Program: Simplifying the Breast Cancer Journey for Patients With Advanced Stage Breast Cancer in Nigeria

Background and context: Breast cancer is the number one diagnosed cancer in Nigeria. 75% of these breast cancer diagnosis are at stage 3 and 4. This is due in part to lack of awareness of the signs and symptoms, inadequate screening and diagnostic facilities, insufficient policies and guidelines, and fear. Metastatic breast cancer patients do not have the time nor the strength to deal with the stress, delay, and confusion of trying to find adequate care. Run For a Cure Africa (RFCA) wishes to establish a program that helps navigate metastatic breast cancer patients in Lagos state, and surrounding states in Nigeria toward breast cancer care and resources. Aim: The MetaPink program empowers and educates patients with advanced stage breast cancer by providing them with timely and relevant information and resources on their disease and how they, the patient, can improve their quality of life and overall prognosis. Additionally, RFCA creates greater awareness of metastatic breast cancer in the community and the necessity for regular screenings. Strategy/Tactics: This project is being implemented by RFCA. RFCA is working work with the health care professionals (HCP) in the oncology and community health department at the Lagos University Teaching Hospital (LUTH) in addition to their organization mentors, The Rose Foundation in Houston, Texas. RFCA is also working with community associations, drama troupes, and groups to create sensitization in hard to access areas. Patients and participants of the MetaPink program have a support team, through the monthly support group, with whom they fellowship, ask advice, gain insight, and just off load any looming concerns. Program/Policy process: RFCA enrolls metastatic patients through our supported clinics, call ins, and our screening outreaches. Each patient enrolled in the program gets a starter pack. RFCA hosts monthly support groups and Q&A sessions anchored by medical professionals, RFCA also hosts community outreach events via the radio, market drama skits, and musical awareness presentations. Periodically we follow-up and communicate with MetaPink program participants via MetaPink WhatsApp, telephone, in-person meetings/visits, and support group meetings. Outcomes: The objective of the MetaPink program is to simplify the breast cancer journey for metastatic breast cancer patients in Nigeria and give them the emotional support and confidence to understand and navigate through their personal breast cancer journey. RFCA also creates larger community awareness of advanced stage breast cancer in a method that is culturally appealing and resonates with the environment. What was learned: As the program progresses, RFCA will learn how to effectively navigate patients in this resource-poor environment. This will contribute to their quality of life and improved breast cancer management in Nigeria. [Figure: see text]

Examining the Association between Treatment Satisfaction and Medication Adherence among Patients with Poorly Controlled Type 2 Diabetes

Adherence to diabetes medications remains an important target for public health intervention, however, approximately 32% of people living with diabetes do not take their medications as they should. We examined the association between treatment satisfaction and medication adherence in people living with type 2 diabetes from the REdesigning MEDication Intensification Effectiveness Study for Diabetes (REMEDIES 4D) study. REMEDIES 4D was a clustered, randomized trial in which certified diabetes educators (CDEs) implemented standardized treatment protocols to intensify treatment for glucose, lipid or blood pressure control. Fifteen practices and their patients were randomized to the intervention or usual care. Eligible participants had uncontrolled HbA1c, blood pressure, or LDLc. The intervention group received diabetes self-management education in addition to treatment intensification, while the usual care group participated in monthly support groups for one year. Medication adherence and treatment satisfaction scores were measured using Morisky medication adherence scale and Medication satisfaction survey respectively. A mixed model was created to account for the cluster randomized design and included covariates for treatment status (intervention vs. usual care group), sociodemographic factors, depression, insulin use, count of comorbidities, polypharmacy, baseline clinical values, adherence score at baseline and treatment satisfaction scores 12 months post-baseline. There were 135 participants in the final study population (mean age of 60 years and 51% female). After controlling for covariates, treatment satisfaction was associated with an increase in adherence to diabetes medications (β=0.34, p=0.02). Ensuring patients with type 2 diabetes are satisfied with their treatment regimen may be a crucial step to improving adherence to diabetes medications. Disclosure N. Emechebe: None. N. Agu: None. M. Malmi: None. J.C. Zgibor: None.

Impact of Certified Diabetes Educators following Preapproved Protocols on Diabetes Self-Care Behaviors—Results of the REMEDIES 4D Trial

Diabetes self-care behaviors (DSCBs) play a significant role in controlling risk factors for diabetes-related complications when practiced consistently. Our objective was to evaluate changes in DSCBs in people with type 2 diabetes from primary care practices participating in the REMEDIES 4D study. REMEDIES 4D was a clustered, randomized trial in which certified diabetes educators (CDEs) implemented standardized treatment protocols to intensify treatment for glucose, lipid or blood pressure control. Fifteen practices and their patients were randomized to the intervention (n=175) or usual care (n=65). Eligible participants had uncontrolled HbA1c, blood pressure, or LDLc. The intervention group received diabetes self-management education in addition to treatment intensification, while the usual care group participated in monthly support groups for one year. DSCBs were measured via the Summary of Diabetes Self-Care Activities scale (SDSCA). Two-sample t-tests were conducted to examine differences in adherence to recommended daily diabetes self-care behaviors between the intervention and usual care groups. The population was 49% male with a mean age of 61 years. The main results of the trial demonstrated a significant 1% decline in HbA1c in the intervention group and no significant change in the usual care group. At baseline, intervention participants tested blood glucose (BG) an average of 4.3 days compared with usual care 3.0 days (P=0.232). At follow-up, intervention participants tested BG an average of was 4.9 days, 1.3 days more frequently than the control group (P=0.004). There was no significant difference between groups for adherence to the self-care behaviors of general diet, specific diet, exercise, or foot care. These findings suggest that CDEs following standardized treatment protocols will improve adherence to recommendations for daily blood glucose testing which may enable patients to maintain better glycemic control. Disclosure K.M. Johnson: None. M. Malmi: None. S. Kuo: None. J.C. Zgibor: None.

The impact of a peer support group for children with rheumatic heart disease in Uganda

ObjectiveTo assess the impact of a peer-support group on knowledge, quality of life, and social support for children with rheumatic heart disease (RHD). MethodsChildren diagnosed with RHD and receiving 4-weekly injectable penicillin were invited to participate in a monthly support group for 6 months. Pre- and post-intervention assessments included a baseline RHD knowledge assessment, a measure of health related quality of life (HRQOL) (PedsQLTM4.0), and a measure of social support (Hawthorne Friendship Scale). Groups incorporated elements of cooperative play and team building, RHD education, and emotional support. Results42 participants attended ≥3 groups and were included in the analyses. Attending support groups resulted in increased total HRQOL scores (60.3v 70.2, p<0.001), as well as the following HRQOL sub-scores (physical functioning 55.3v 68.6 (p<0.001), social functioning 64.2v 75.8 (p<0.001) and school functioning 59.2v 69.1 (p=0.001)). Significant increases in Friendship Scale scores (15.4v 19.7, p<0.001) and RHD Knowledge scores were observed (3.6v 6.4, p<0.001). ConclusionsPeer-support groups may be effective at normalizing decreased HRQOL scores and increasing RHD disease knowledge and social support. Practical implicationsPeer-support groups implemented in conjunction with RHD screening can minimize the negative psychosocial effects associated with early RHD detection.

On Depressive Realism and humanistic therapy

Dear Editors,I always seem to have a number of therapists as clients and I also run a monthly support group for therapists. What I have noticed, and which confirms my own experience, is that when w...